October 19, 2023

Written by: Sarah Greer

I sat down with Gia DeMarco, who works in the SODI Lab at the Autism Institute, to learn more about her work, her self-advocacy, and how people can be more inclusive in their work lives and their personal. Gia is originally from Northeast Philly, has a background in science, and is currently getting her master’s in special education. She is studying special education because her main goal is to help find and provide supports for kids with disabilities.

“I have dealt with a lot of discrimination being a disabled person and being a disabled woman. I went until I was like seventeen without knowing I had any disabilities. At seventeen, I was diagnosed with dyslexia. I also was initially diagnosed with auditory processing disorder because I failed the CAP test [Central Auditory Processing]. I got zero percent on some parts, which should have been a good indicator [that I was hard of hearing]. I remember times in grade school when I was punished for not knowing how to read. I was kept in from recess or put in a time out.”

Many of these experiences have informed her plans and the work she wants to do. “I want to be in the trenches with the kids, helping them figure out things.” Gia has learned to self-advocate herself and hopes to impart the knowledge she has learned to any kids who also want to be self-advocates. “Throughout my academic experience, I have been set up with accommodations, and then they just never happened.” After her first year in college, she dropped out because she was struggling without accommodations. She felt like she was working twice as hard as she needed to because she didn’t have the proper accommodations. She was in and out of five colleges to get her psych degree. When she was twenty-one, she was finally diagnosed with profound hearing loss. Gia has autoimmune inner ear disease (AIED). AIED is an inflammatory condition caused by an uncontrolled immune system response that attacks the inner ear. “Sometimes I can be fine, and my hearing is decent, but even on a good day, people’s speech sounds muffled.”

When asked what she finds important about her work, Gia stated, “What are the injustices or inaccessibility that people are experiencing, and how can we help with that? That is what I am really grateful to be a part of. My work allows me to see what people are directly experiencing, what their lives are like.” Gia does qualitative analysis for the SODI lab. She finds qualitative analysis to be reminiscent of storytelling, and that is what she loves about the work. She is inquisitive and wants to use this curiosity to help parents and children tell their stories.

When asked what advice she would give someone starting their self-advocacy journey, she said, “It is hard [being a self-advocate]. Surround yourself with people going through similar experiences to you. They can help you learn how to self-advocate at work. Or connect you with advocates that can help you do that.” Gia recently gave a presentation about ensuring closed captioning is turned on in everyone’s Zoom at work. Many people need closed captioning, and it is not a default setting. Everyone needs to make sure it is turned on to ensure their peers at work can access captions if they need them. You can find instructions on how to make sure this setting is turned on here. “Society does not build itself around people’s individual needs. More people are disabled than most of us realize. We have to figure it out together.”